Please consider helping me to make May 31, 2012 – the second anniversary of losing Henry – a day that means hope for other teenagers and young adults struggling with an addiction to drugs, as my child struggled.
You can help other young addicts, and honor my son’s legacy of love by participating in the just-launched, 2012 Online Auction for Henry’s Fund. All proceeds raised from the Auction go directly to pay the costs of high-quality addiction treatment for kids between the ages of 12 and 23 – young people who need help, before it’s too late.
I provided the flowers, and Litton’s in Fountain City hooked me up with the Italian Cream Cake upon which to display the flowers.
Betsy is still VERY sick with Transverse Myelitis. She’s mostly bedridden, with the occasional, painful trip out to do something necessary or for the kids – and even then, she has to have someone drive her – but mostly she’s stuck in her bed, in the bedroom, in unrelenting pain, with muscle spasms that cause her whole body to twitch and shake.
Her neurologist has now definitely identified the locus of the TM; she has a lesion on her brainstem that’s visible to doctors, and then a special nerve conduction test verified that this is where the inflammation is. Knowing where it is is good info to have, but doesn’t fundamentally change the fact that Betsy went to bed healthy one night 10 weeks or so ago, and woke up the next day with a terrible, debilitating illness that should eventually get better, but there’s no timetable and there are no guarantees.
There’s no evidence yet that the series of Acthar shots helped, and the Lyirca was a bust. It didn’t help much and she developed vision problems as a side effect. So far nothing else has helped much to treat the symptoms either. And no medication or treatment exists to actually make her better.
Only time, if she is to get well.
Seeing her suffer like this is terrible. I’d do anything to make it stop.
Two years ago tonight, I knew that my child was dying, although I didn’t know that I would only have 48 hours left with him -almost exactly 48 hours.
Those final two days – from the evening of the 29th until the evening of the 31st – were so painful that I’ve never described them in full to anyone, and I am not sure that I ever will.
The discussions with the doctors. The decisions to be made. The visits from the organ donation people. The nurses chatting and laughing outside the ICU cubicle where I sat next to him behind a curtain, wishing we could be doing this anywhere but in a cubicle, behind a curtain, in a building full of strangers. The gathering of people in the waiting room, where I would periodically wander in a daze, and then wander back out again, weaving down the hallway back to the cubicle where he was dying.
When Henry was born, I’d been given a hospital “birthing suite” to bring him into the world, with privacy and a rocking chair and big windows with light. I had wanted flowers and music in the room when I birthed my baby, and I had them.
But there was no dying suite for me to be with him to help him leave. Just that damn, windowless cubby with the too-short curtain and the incessantly inquisitive organ donor representative, peeking around the fabric what seemed like every few minutes in the last day or two to ask if we were, “ready to talk yet.”
Oh God, those last 48 hours were hell. Just utter hell.
Wishing it would happen more quickly, so he could be free, and then resisting with every molecule of my being, begging for just one more day.
And begging the nurses over and over to make sure he wasn’t hurting. Asking if there wasn’t something else we should put in his IV so I could be sure he wasn’t hurting, since he couldn’t tell me. And I was obsessed with the idea that he was thirsty, and needed a drink of water that I couldn’t give him. I was so sure that he needed me to give him a drink. Those nurses were so patient and kind with me, as I would ask these same questions again and again and again.
In the last 48 hours, I tried to memorize every curl – what was left after they’d cropped his hair close when they moved him back to the ICU – and I traced the shape of his earlobes, and way his eyebrows arched just so. I studied his long, elegant fingers and ridiculously huge teenage boy feet, still criss crossed with tan lines from the Chaco sandals he’d been wearing when he was brought into the hospital unconscious five weeks earlier. I inhaled his scent, still there, underneath the hospital smells, and honestly, I would have licked him all over like a mother cat if I thought I could have gotten away with it without someone hauling me off to a padded room somewhere else in that hospital.
Because I knew that these were the last times I would ever see and smell and touch these things again – these details of my child, whose exquisite face and body and fingers and toes and eyelashes and hair and lips and nose I’d been marveling over since another nurse, on another day, in a hospital just across town, had first laid him in my arms. On that day, I reveled in the lifetime ahead I thought I would have to enjoy admiring my stunning, perfect baby boy.
But on that evening two years ago tonight, and in the 48 hours that followed, I was frantic in my need to drink it all in. I knew there would be no lifetime, so I was desperate to imprint every nuance of his physicality onto my brain and heart so I would never, EVER forget.
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I wanted my garden to be extra pretty this week. I have been weeding and planting and mulching and watering in hopes that the flowers would arrive in time for May 31.
And they’ve started to bloom now. Here are some that I see tonight.
Over in my latest blog post at HGTV Gardens, I am sharing my raised bed progress, and discussing my ambitious plan to “trellis” the melons I am attempting to grow vertically rather than horizontally. I’m also looking for feedback from others who have successfully pulled this off.
Note how I have thoughtfully provided these cheery red tomato cages for my Amish muskmelon plants to enjoy as they grow.
Jeff Tweedy & his wonderful wife Susan Miller Tweedy
AC Entertainment (Bonnaroo tickets!)
Jon Stewart
Samantha Bee
Charlie Daniels
Don Dixon
Nick Hornby
and more are being added tonight and tomorrow.
It took us longer than we anticipated to get things up and running, but WE ARE LIVE!
Thanks so much to everyone who has helped make this happen. I believe that Henry would be so thrilled with the way so many artists he admired have generously pitched in to help kids struggling with drug addiction. He hated being addicted, and never wanted anyone else to suffer as he did.
From closest rows to the ones at the far end of the photo you see:
- Two rows of pumpkins I started from seed
-One row of Amish muskmelon (training up onto tomato cage)
-One row of sugarbaby watermelon
-Two rows of strawberry plants
- Two rows of two different kinds of heirloom tomatoes
- One row of carrots that haven’t sprouted from seed yet.
- Two tiny cherry tomato plants
- Red container with eggplant
-Yellow container with small bell peppers
- I have room for one more row of something biggish- maybe corn?
Ambitious, huh? And as you can see, I haven’t yet finished painting my raised beds purple as I intend.
So what are you growing in your vegetable patch this year, and why? What are your favorite fruits & veggies to grow, and which ones have proven to be nothing but trouble for you? Tell me in the comments below.
